Being ill for a long time whether it is from childhood or something that has happened as an adult can take a major toll on how you view yourself or even make you feel like you have “lost” yourself. Many chronically sick adults grieve for the person they once were and although I can’t say that was the same for me as I was sick from being a child and it has pretty much been all I have ever known. I asked in a couple of groups on Facebook not specifically to do with ostomies but about being chronically sick to see what others thought.

“Finding yourself” can mean many different things to many different people and as my Nanna says variety is the spice of life! For

many of us it is a work in progress; each and every one of us is absolutely 100% worth the journey no matter how long it takes. It isn’t for everyone as I was pleasantly surprised how many people actually said yes which is obviously a good thing. It shows to the ones including myself who haven’t quite gotten there that there is hope and light at the end of the tunnel.

00Steve thinks that I have had a hard time adjusting to the fact that I’m well after my stoma was formed in 2016 as for 20 years I had been sick and was used to being in pain, tired and if I’m honest often in a highly charged emotional state. To an extent I think he is right; but having IBD means there are associated symptoms as it is an auto immune disease, so for me I am healthy and I am the healthiest I have ever been. But and yes there is a but, the symptoms that lingered in the background are now at the forefront for instance my joint and scar tissue pain is definitely letting me know it is there!

This along with my mental health issues (which I am open about on my blog) are what I find the biggest obstacles in allowing me to find myself after illness. I do try to be kind to myself and remind myself that I am learning about a whole new side to myself that I never knew I had.

So like I said I asked in a couple of groups about whether others have “found themselves” after long term illness and I was allowed to share some of their experiences:

Natalie over at The Spoonie Mummy wrote: It’s taking time but I’m getting there. Life has changed and I have had to adjust but following surgery and a dramatic improvement in my health I feel like I’ve been given a new lease of life. Getting used to a new routine took a while but now everything is second nature. I’ve met some wonderful people who have helped me on my journey, taken time to consider my mental health, tried to always keep my positive pants on and always try and listen to my body and what it needs

Jenny over at Tripping Through Treacle wrote: I have been diagnosed with MS since I was 15 years old (I’m now almost 40 years old). Sometimes I could accept myself as I am if others around me did too. I used to feel fine until about six years ago then my health changed everything and my illness became worse. My husband won’t accept the ‘new me’. So yes, I can have that feeling of accepting myself but it takes a lot of self – love and putting myself first and knowing how to help myself.

Hannah over at An Ordinary Girl With MS wrote: I “found myself” after my fourth relapse last year.. it had been a roller coaster of emotions.. ‘trying to get people to understand how I was feeling who just didn’t get it’ or making sure I didn’t go out and enjoy myself etc… Then during that last relapse something clicked! I started actually listening to my body, feeding it good food and doing things that I actually enjoyed! I also designed the new motto called “Not My Problem” and I practice this in a daily basis. When you have a chronic illness, you just really need to do what’s right for you and not others, other people don’t know how you feel, only you.

I hope that one day soon I find the version of me I was always meant to be – actually no scratch that I AM the version of myself that I was always meant to be; I just need to explore this chapter of my life and embrace it because nothing is certain in life most definitely not our health or even our life expectancy. I am lucky to have been given a third chance at life and I have so many plans and experiences that I want to do which hopefully will bring me closer to finding myself after long term illness.

Do you feel like you have found yourself after long term illness? What helped you along the way?

Stephie-Jayne Simpson

I’m Stephie a punk rock and crime drama obsessed, married mum of two, blogger (www.colitistoostomy.com) and advocate for other ostomates. I have lived two thirds of my life chronically sick with Ulcerative Colitis which is a form of Inflammatory Bowel Disease; I got sick at the tender age of 10 and wasn’t diagnosed for another 2/3 years and was at the time the youngest person diagnosed at my hospital.
I spent most of my teenage years in and out of hospital, how I managed to get good grades I will never know as I spent so little time at school, exhausted and in excruciating pain. I have had two surgeries on my bowel; the first to create a Jpouch which I lived with for 8 years before it failed pretty badly with Pouchitis and the lining swelling and filling with pus, which lead to me having a permanent ileostomy formed and not once have I looked back with that! In fact it has opened more doors for me and given me opportunities I could never have dreamed of!
I am extremely grateful that I was able to fall pregnant with my Jpouch and have my daughter Lyra-Beth, then again after my ileostomy with my son Jacob. Having children when you have IBD, or after abdominal surgery can be unknown territory as we don’t have a TV screen into our tummy’s but like me you can have healthy pregnancies and babies obviously as long as there isn’t any underlying issues.
Writing whether it’s a blog or just a diary can really help the adjustment process of having a stoma hence I have a blog as I found it hard to talk about my feelings. There are loads of facebook support groups which can help also especially if your stoma was an emergency operation. Knowing you can keep trying bags and “accessories” such as sprays till you find what works for you is something a lot of people don’t realise, they often think what the hospital gives you is it! Also my inbox is ALWAYS open if you would like to chat.